Plaque psoriasis is ruining my life (rant)

[Eclair]

I was diagnosed with plaque psoriasis roughly 3 years ago at the age of 20. In the beginning, I thought it was just some strange dry (yet painful and unbearably itchy) skin. It began on my ears, face and scalp. It soon covered a large chunk of my body. At one point, there was barely any skin above my chin that wasn’t red and flaky.

In addition to the auto immune disease, I’ve suffered from iatrophobia, which is a fear of doctors, since I was a young teenager. As a result, seeking treatment wasn’t an easy thing for me to do. I tried convincing myself my issues with my skin would go away. Unfortunately, my skin was worsening by the day.

By the time I sought treatment, psoriasis had taken a extreme toll on my mental health. Depression and high anxiety sunk in. I actually had a doctor at my college laugh at my face when I explained my mental health concerns with her. “Psoriasis is making you depressed? LOL” Real professional, right? Needless to say, the incident set me back quite a bit before moving onto a new physician.

A couple months later, a new GP referred me to a dermatologist in the area. With the new dermatologist, I eventually began a medical study for psoriasis! The drug was similar to Enbrel. Worked wonders at the beginning. Within two weeks, my face was almost completely clear! Unfortunately due to complications and a return of psoriasis, I had to withdraw from the study.

Fast forward to today, approximately eight months since my last injection with the study, my psoriasis is back!! Not to the same extend as previously mentioned above, but getting there…

Since the return of my psoriasis, my mental health is at an all time low… Social situations give me extreme anxiety. I can’t look at people in the eye. I panic when people try and talk/look at me. I refuse to leave the house unless I’m heading to the barn or if I gather the strength to go to work. I have nightmares about being in social situations and people staring at my skin. Today even, I had a severe anxiety attack resulting me having to leave work. I tried pushing myself to stay till at least lunch, but I couldn’t do it. I had to get out of there. It’s been an extremely difficult adjustment for me. I use to be a social butterfly… I use to be that outgoing, loud, funny friend. Now, I’m just that person quiet friend who doesn’t say much (not that anything is wrong with individuals who are naturally quiet/keep to themselves, that’s just not me).

In the meantime, I am on medication for my mental health but it hasn’t been life changing. I have my okay days, and I have my terrible days. Today being one of those bad days.

As for my psoriasis, I am waiting on potentially started a new injection for my psoriasis. I’m praying I get the new medication. I want my old skin back. I want me back.

But I will say, thank God for horses. I know my guy will never think I look silly with red patches all over my body. As long as I give him his treats, he’ll love me forever

Thank you if anyone reads this. I have a great support system but it helps to vent to strangers. I pray no one is going through the same situation as myself.

[Cherry]

Have you tried taking MSM for your psoriasis? Or fish oil?

I had a mild case once and was put on antibiotics. Problem cleared up and hasn’t been back but that was probably forty years when doctors would give you antibiotics at the drop of a hat.

[hosspuller]

A friend is taking Enbrel for his Psoriasis. It’s done wonders for him.

[Squirt]

I just started on Stelara two weeks ago, and I’m about 50% cleared already. I understand your anxiety about how other people look at you, I’ve been there. I finally came to the conclusion of screw em if they can’t accept me. I’m gonna live my life, and I can’t do that if I’m worried about what everybody else thinks of me. It’s been liberating in so many ways. You’ll get there, maybe with help, maybe on your own, but you’ll get there. And find a dermatologist that you like and trust. They’ll work with you to find a treatment plan that’ll work for you. Hang in there, I got my first flare about the same time you did. I’m 36 now with a very full life.

[Marshfield]

It’s tough to be so young and staring at a chronic autoimmune condition. I do see how this can be life altering as well as leading to depression.

As tough as it is, seeking out either a dermatologist or rheumatologist/immunologist is probably critical to you getting healthy. I take Enbrel for RA and it allows me to be fairly normal.

[Trinket]

I just got new that I MIGHT (Might not, really hoping not) have an autoimmune disorder as well (To be honest it’d be my 2nd), and it’s been very mentally exhausting.
I cannot imagine how hard it must be for you. I have depression as well, and it took a while to find effective meds for that, keep at it, it IS well worth it!

I have no advice or wisdom on the psoriasis, except that getting a good rheumatologist is essential! (Not to say that you don’t have one, you might!)
And I’m also very very sorry your ex-GP was so unprofessional and callous. Having a fear, and then having someone confirming that fear when they’re suppose to be helping you, is terrible. I hope your current doctors are much more empathetic and caring: as they should be!

[arapaloosa_lady]

Are you in therapy or just taking medication? Unfortunately, psoriasis can be hard to manage (as you’ve figured out), so it would help if you can figure out how to adjust to life with this condition.

Have you ever met with a really good makeup artist? They can teach you how to cover up nearly anything. It won’t cure the psoriasis, but you can have some tools to look good & feel good in a social situation.

Otherwise, just hugs. I have a few autoimmune diseases (they like to come in clusters!), and one is really nasty when it flares up. I definitely have to work hard to keep my head above water at those times. I can’t give you specific advice… sometimes I don’t even know how to advise myself. Sometimes it helps to let myself be grumpy & dwell for a night to let it all out, sometimes that just spirals my thoughts.

[Frog_Pond]

Check out Terry Wahl and Mark Hyman. They’re both doctors who work on diet and lifestyle changes for people living with autoimmune disorders. You’re young and otherwise healthy, and might see the best effects from this sort of approach. Also, they’re very validating of how hard it is to feel so crappy with these often invisible disabilities. Good luck. You’re reading the right forum – lots of tough women on COTH!

[catherines]

I have plaque psoriasis and Psoriatic arthritis as a result …Been suffering with this for 25 years . My heart goes out to you . It is a miserable ,disfiguring autoimmune disorder that many don’t understand.
I fortunately have a very sympathetic family Dr. and a good Dermatologist . I shuddered when I read you statement about that idiot who dismissed you so cruelly when you told her about the depression and such . It is very real and heartwrenching.
I found the best thing for mine was a combination of the Betamethasone cream and Methotrexate. The Methotrexate does have a possible impact on your liver so frequent monitoring of blood levels is important.

I am glad to see that you have a great support system of people who do understand that is important.

And to add my outbreaks come in cycles that include joint and body pain and exhaustion . Any insult to the body , ie a cut or scrape or an infection of any sort even a cold can trigger an outbreak .

I try to work through it and spend time outdoors with my horses , I work full time also . And btw I am now 65 years old . There is no cure , just learning to live with it and taking and using whatever treatments work… These can change from time to time .
ure ustt aki

[saffire_100]

No advice but hugs for you OP. Stay strong and keep looking for solutions.

[peedin]

I’m sorry you are going through this. You are working on medical management, but I think you also need to work on mental health management with a therapist. Anxiety drugs are great (speaking from experience) but adding in a therapist will help immensely.

[The_Centaurian]

You are not alone!

There a couple of discussion groups dedicated to P that I have found helpful:
https://www.inspire.com/groups/talk-psoriasis/
http://www.healthboards.com/boards/psoriasis/

Sunlight is one of the best treatments for you skin condition AND for your depression, and it does not require a doctor or an Rx. Moisturize your skin often and do your best to get some sunshine on the affected areas every chance you get (get some sun on lunch break, hand grazing your horse, etc).

There are lots of over the counter medicines such as coal tar and salicylic acid that you can get without a prescription at the pharmacy, and Neutrogena makes a really nice coal tar shampoo called T-Gel that changed my life.

Some people get relief from a change in diet (no red meat, no tomatoes, no potatoes, no eggplant, no tobacco, lots of water), and some people swear by soaking in a lukewarm (not hot) bathtub and/or using a gentle exfoliant.

Feel free to PM me if you want-- I have suffered from P since about 9 years old, when my family dr. misdiagnosed me with a skin fungus.

[Eclair]

Thanks for the replies everyone. I am currently in the process of getting a prescription for Enbrel (just waiting on insurance company at the moment). Praying for even the slightest improvement with my skin! Trying my best to stay positive xo

[Dramapony_misty]

My mother has suffered from psoriasis since she was a teenager (spots on scalp, knees and elbows covered, spots on her legs, and almost everywhere she has has a scrape or wound. One thing her doctor encouraged was to get out in the sun. Something to do with the ultraviolet light reacting with the psoriasis spots and making them fade. She doesn’t go tanning or anything, but does try to be outside in a tank top and shorts as much as she can in the summer. That really seems to make a difference for her (in addition to the current prescription creams she has).

I know everyone is different, but it might be worth a shot.

The good part of the story is that she didn’t let her psoriasis stop her from falling in love, getting married, having a fabulous kid (ME! :-P) and just enjoying life.

I agree with everyone above who suggested mental health management…that can be just as important, if not more so than anything physical.

[pony-girl]

Have you heard of a new approach to dermatology called psychodermatology? I’m looking into it for my eczema. It actually takes into account how our perception of ourselves can affect skin diseases and make them worse. It’s a psychologists and dermatologists approach rolled into one or in conjunction with your other doctors. Good luck! If I get an appointment with the dr I’m trying to see I will post about my experience.

[Eclair]

[QUOTE=pony-girl;8262095]
Have you heard of a new approach to dermatology called psychodermatology? I’m looking into it for my eczema. It actually takes into account how our perception of ourselves can affect skin diseases and make them worse. It’s a psychologists and dermatologists approach rolled into one or in conjunction with your other doctors. Good luck! If I get an appointment with the dr I’m trying to see I will post about my experience.[/QUOTE]

I’ve never heard of psychodermatology but it sounds intriguing. I’m going to look into it right now! I’m sorry to hear you have eczema, though. Keep me updated!

[TKR]

My profound sympathy to you in this struggle. I have had psoriasis since I was 5 and will turn 62 in October – so I get it! It was much worse when I was younger through my 20’s and then the plaques lessened. But I do know that stress causes mine to flare up. I am also on anti-depressants and anti-anxiety meds, as I’ve struggled as much with that. I’ve had ALOT of joint pain and issues, but have also abused my body with the horses for years, including some bad spills and breaks. I finally saw a Rhematologist who is a very respected doctor and a friend of many years (horse related). He was wonderful and injected my sore knee and started me on Methaltrexate, which is already making a difference. I’ve seen dermatologists over the years, changed my diet, but never found what I eat really matters in my case. Although if I enjoy too much wine for several nights, that does. Mine is clearly stress related and I don’t have alot of problems with it other than isolated spots or scalp. Everyone is different, so try different topical meds and internal and see what works for you. It’s not a one size fits all. I can’t use tar shampoos since I color my hair, which might be a problem for you also. There are alot more of us who have this than you may think – good luck – it really will get better!
PennyG